Huti Watson Joins Variant Bio’s Ethics Advisory Board
After 2 years on Variant Bio’s EAB Māui Hudson is stepping down and Huti Watson will continue his legacy
Kia ora (thank you) Māui Hudson from the entire Variant Bio team!
Māui Hudson (Te Whakatohea, Ngā Ruahine, Te Mahurehure) MHSc, who has served as an integral part of Variant Bio’s Ethics Advisory Board (EAB) for the last two years, is stepping down to continue with his work at the University of Waikato and abroad. We thank Māui for his hard work throughout the COVID-19 pandemic and this extraordinarily active time worldwide. Māui has been an amazing advocate for the perspectives and rights of Indigenous people on issues of data privacy and genomic research. During his tenure as an advisory board member, Māui has been actively publishing on issues of data privacy through the Indigenous Data Governance and the CARE Principles (2021) and championing other initiatives such as the Traditional knowledge and Biocultural Labels (2021). As a clear leader in bioethics in genomics and a person with invaluable cultural knowledge, we are sad to lose this unique perspective. However, we are very fortunate to have a new voice that we are confident will continue Māui’s legacy with the addition of Huti Watson (Ngāti Porou, Tainui) MPH.
As the recent deputy chair of Ngāti Porou Hauora Charitable Trust (NPHCT) Board and chair of the Aotearoa New Zealand Genomic Variome Project, Huti advocates for the rights and views of Indigenous people and brings a unique perspective to genomics research. The Variome Project’s goal is to gather and analyse genetic variation in Aotearoa’s (New Zealand) unique and increasingly diverse population. Conducted through Genomics Aotearoa, an organization formed to ensure that New Zealand has an active role in the development and leadership of international genomics and bioinformatics research, the Variome project seeks to correct ongoing errors in biomedical research. For example, the Variome project is led by Māori (the Indigenous people of New Zealand) researchers; Huti and other individuals ensure that participants are appropriately consented from the perspective of traditional knowledge, and that the benefits are consistent with Te Ao Māori (Māori worldview). Huti’s work with Ngāti Porou, a Māori tribal group, has strongly influenced the health of her people and the integration of scientific research with Indigenous worldviews.
Indigenous perspectives are extremely important to capture in genomics because of the long history of exploitation and oppression by researchers. It’s important to address and act upon the systematic exclusion of marginalized groups from fields which benefit at their expense. At Variant Bio, we take this task seriously and actively seek out the input and inclusion of persons that have been forced to the fringes of scientific, and specifically genomic spaces. That being said, genomics encompasses more than just humans and also includes research on plants, non-human animals, and ecosystems. Both our outgoing EAB member Māui and our incoming member Huti occupy important roles in the development of genomics in these areas and the advancement of scientific endeavors within Aotearoa/New Zealand and internationally.
We wanted to hear from Huti about her perspective on these issues in genomics and biomedical research. Below is our interview with Huti, which has been edited for clarity and to retain the concepts of discussion.
Q: How has your upbringing influenced how you feel about bioethics and community engagement?
My upbringing was very instrumental in forming the views I have now. My mother was very deeply involved in our culture and language. She was a native speaker of Te Reo Māori, and she kept me close to my people, and my marae [communal sacred place]. She was a product of the “Urban Drift” that happened with her generation. Between 1936–1986 many families moved to big cities from their rural and tribal communities. This move created a divide between rural and urban Māori and a cultural divide between those who were separated from their heritage. In my early years I lived in a rural community, with my iwi [tribe], but then I went with my parents to live in a city where I spent a few years before going back to the Coast. My mother taught me about her understanding of our culture, the environment and whakapapa [familial lineage]. We as Māori have this amazing skill to be able to recall our family history and to have retained our genealogy for generations and this impacts on how we engage with, and think about research. For me, genetic research is about whakapapa, and the relationship to your ancestors. You represent them, and are the sum product of those who came before you.
“It’s about whakapapa, and the relationship to your ancestors. You represent them, and are the sum product of those who came before you”.
Q: Do you think that your exposure to more western ways of life during your time in the Urban Drift and time spent outside of your community has taught you anything?
Being exposed in my early life to “western life” I learned two things very quickly. The first was about racism and the second was about expectations, and where my major lessons in biculturalism occurred. Because of the time I spent away I can be comfortable in both Indigenous and non-Indigenous environments. It can be more comfortable with non-Māori at times because they don’t have the same expectations that your elders and your own people do. They aren’t watching you in quite the same way. However, one of my elders said this about living in two worlds, “Two is better than one.” Our tribal leader Sir Apirana Ngata left us a proverb that has shaped and defined our tribal approach to the new world of colonisation:
E tipu e rea mō ngā rā o tō ao
Ko tō ringa ki ngā rākau a te Pākehā
Hei ora mō te tinana
Ko tō ngākau ki ngā taonga a ō tīpuna Māori
Hei tikitiki mō tō māhunga
Ko tō wairua ki tō atua, nāna nei ngā mea katoa
— Tā Apirana Ngata
Grow and branch forth for the days destined to you
Your hands to the tools of the Pākehā for the welfare of your body
Your heart to the treasures of your ancestors as adornments for your brow
Your spirit to God, who made all things
— Sir Apirana Ngata
Having that ability to adapt to outside influence requires an entrepreneurial spirit, and the notion that we should aspire to be part of the new emerging technologies that come with genetic research so that we can not only support our people but also play a leading role in this space.
Urban drift was a huge part of my life and helped me to see exactly what racism meant. It also has helped me to understand the hardships of Indigenous people and those that are a direct result of colonization such as the appetite for land and resources by colonisers, and the injustices wrought among Indigenous people. I frequently think about ways to set things right and try to position myself where I may influence for increased equity for Indigenous peoples. An important thing to remember is that being pro-Indigenous doesn’t mean being anti-European or anti-Western. I very much espouse the notion of the oneness of humanity, yet recognise that welcoming and embracing diversity within that space is often not well understood. It’s about finding a space where you can work in a way that helps to create better balance. This idea relates very much to the health field, having been on the Ngāti Porou Hauora board, our tribal health board, I know that our people suffer from much higher than average health disparities within New Zealand and a range of comorbidities, and this situation goes right back to the time of colonisation. That knowledge has been a great motivator to be in the [genomics] space and to draw on a range of tools that could be used to solve those health inequalities. I see biomedical sciences and genomics as a way to do that. I’m not a scientist, and I always say that, but there are perspectives that I bring that can contribute to the correcting of those inequalities.
“I think one of the biggest things to remember is that being pro-Indigenous doesn’t mean being anti-European or anti-Western. It’s about finding a space where you can work in a way that helps to create better balance.”
Q: Colonialism has had a huge part to play in the history of genomics worldwide, do you see a way to rectify this history?
The social and economical consequences of colonisation will be with us for a long time but I think that some research sectors in New Zealand are looking to be a good example of rectifying the negative colonial research history. The importance of respect and long-term relationships with our partners and researchers may be very different from other countries. We have a unique position in New Zealand specifically with the Treaty of Waitangi [A treaty signed between Māori and the British monarchy that established the political relationship between the parties]. Being signatory to a treaty provides a different position of authority and terms to bargain as partners with the Crown. We have been actively striving to have this partner-to-partner relationship for many generations and it has taken a lot of sacrifice and work on the part of those who have gone before us to alter the paradigm. To our people, research has been a dirty word. It’s been a case of researchers bringing their own interests, appropriating our knowledge, capitalizing on it, and in some cases not appropriately acknowledging the sources of where that data [and knowledge] has come from.
In the new paradigm researchers need to consider, “Is this research centred on my own preferences or do I want an authentic relationship with this community?” Am I interested in community research needs and aspirations? The word relationship is important here. That implies that there needs to be respect, communication, openness, and making a conscious effort towards coming to an understanding in areas where you don’t agree. In a relationship there is reciprocity, both parties feel like they’re being acknowledged. I learned this from a tribal leader Api Mahuika, and I’ve gone forward with that distinction and prefer using the term “relationship” rather than a “partnership.” Partnership implies a 50/50 interaction where both parties lay out the terms of engagement, but this dynamic isn’t a reality for many Indigenous peoples. The word relationship has different implications. Relationship implies that there is responsibility on both parties and that there is equality in the interaction. If we can ask ourselves, “What are the needs of this population? What are their aspirations? And, what is my role as a researcher in addressing them?
“In a relationship there is reciprocity, both parties feel like they’re being acknowledged.”
I will just say that I am over pet projects. I mean that I am very done with the idea of a project exclusively based on an outside researcher’s own interests and then try to interest you in that idea. I’m not saying that it’s bad inherently, but for Indigenous communities we want researchers to understand our needs and aspirations and that the research will meet them. We should be the primary beneficiaries of the information produced from the research with us, meaning that we should derive benefit from the knowledge, treatments, discoveries, and other technologies that emerge from that data.
Q: Where do you see the future of genomics in regards to private industry? Academia?
The future of genomic research is really interesting to me and I think it will play a greater and greater role in our lives in both private industry and academia in the coming year. We can see this with the acceleration of its use in the Covid pandemic. However, ethical considerations and human rights play an even greater role than ever before and we see the importance being placed on this in New Zealand where many Crown Research Institutes are rapidly developing more robust policies and procedures in order to engage more effectively with the Indigenous population and in a way that takes into account cultural considerations, whilst trying to undo the negative colonial history of appropriating Indigenous knowledges. I’m suggesting that in the future of genomic research, there’s no place for that way of thinking anymore. We cannot act in the same way that we have in the past and expect there to be better outcomes.
Q: You’ve talked a lot about long-term engagement and relationships, can you talk about what that looks like to you?
From my experience, relationships and long-term engagement looks very much like what we [Ngati Porou Hauora] have with the University of Otago. We actively celebrate the long-term relationship that has been ongoing for 15 years. This has been maintained between researchers, who come twice a year to our community. They talk about the research they are doing in general, and this keeps them engaged with the people. They continue building on their initial connections and are always open. That has enabled them to continue working together with Ngāti Porou and they send out information sheets and emails for everyone to know what’s happening. They’re seen. They’re not just bits of paper, and Prof Tony Merriman and others of Otago University have been excellent examples of this.
There is also the institutional relationship with the organization itself as an important factor. I think that communities, researchers and their institutions need to be thought of as three protagonists who interact in a way that manifests beneficial change over time. I am excited to be part of the Variant Bio Ethics Advisory Board team, to learn about the projects, participate in conversations with people with broader perspectives, and how to pursue developing relationships with Indigenous communities on an international scale. I think of my journey with Variant as a metaphor of the waka [canoe]. If the paddlers change, the waka keeps moving forward. You should be able to switch out researchers and people and know that the relationship will continue. Whoever is working in those spaces needs to be prepared to keep coming back either at the institutional level or at the individual level and mindful of the need to maintain those relationships on behalf of Variant Bio going into the future.
“It [research] should be thought of as a waka [canoe]. If the paddlers change, the waka keeps moving forward.”
Q: Can you talk about your involvement in the current movement of Māori engagement in genomics?
A few years ago on the Ngāti Porou Hauora board, I got a call from a relative whose daughter was a doctor that came back from the United States. She said, “My daughter is talking about genetics research and it’s all really centered around people of European ancestry and we’re going to miss out if we don’t do something.” I said, “Not if I can help it.” So I went to our board and research coordinator Jennie Harre Hindmarsh who had been working with Tony Merriman. I knew about the Genetics of Gout project but wasn’t clear about its role and our participation in genetic research. I said to Jennie, “This is what one of our relatives has said and she is worried. We can’t miss out.” Jennie said , “We’ve already laid the groundwork.” Shortly after, I went to the Ngāti Porou board meeting and decided that I would take up the responsibility to build the capacity of our board in this space. I attended the Summer Internship for Indigenous People in Genomics (SING) and participated in the conversations there and my support for our tribal participation in genetic research grew. I wanted to learn more and it was really difficult at times because interaction with scientists and scientific speak there are all these words you don’t understand, trying to have a conversation and just googling things the whole time. But then I realized I just needed to bring the skills and perspective I have to support these researchers and scientists so that we can work together to advance things. That has meant being an advocate, working to engage other iwi [tribes] in the Variome Project so we can better understand our population. This is still ongoing but it has been an interesting space. I am also now engaged with various Crown Research Institutes and other organisations in developing frameworks for working more effectively with Maori, and have in particular been involved in a Maori movement to lead genomic research in a way that ensures Maori leadership in shaping how research should be conducted for Maori.
Q: What do “Benefits to the community” mean to you in the context of research?
Benefits have been a new thing for me in terms of learning about what Variant does. Benefits seem to be doing what’s most feasible. For me, benefits can be more than money. It means sharing data and helping people to understand the information that has emerged from the data. Engaging communities in conversations about the research empowers and builds further capacity.
I come from a family where a gene variant has been discovered that has been associated with an aggressive stomach cancer, and this is one of the motivating factors for my participation in this sector. Many family members have died as a result of this variant and so in order to prevent this we do genetic testing. If the variant is found then the treatment is to remove the stomach. If you don’t have the variant then you won’t be able to pass it to your descendants. So in this respect there is a clear benefit in this type of work and we hope that in the future there may be different treatments for this disease, perhaps other discoveries that come from engaging with genomics, but we won’t know unless we participate. One of my nieces was tested at 21, had her stomach removed, and when they looked at the stomach they found cancer already in the lining so her life was saved with this work. There is so much more to be learnt and the vision of personalised medicine is a worthy goal that will probably turn my profession — public health and health promotion on its head in the not too distant future.
Q: Is there anything that you want to say in closing?
I would love to mention that I have the utmost respect for Māui, and the rest of the board, and that I am very pleased to have been invited to serve on the board at his recommendation. I am extremely interested in the new ground that Variant is forging in working with populations to create relationships and share benefits back to the communities that they engage with. I know that learning how to do this will not be easy but congratulate Variant Bio on its visionary work.
Once again we would love to say thank you to Māui Hudson for the time he has served, and to Huti for agreeing to take on this role. We are very much looking forward to working with you!
